“When you have come to the edge of all light that you know and you are about to drop off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on or you will be taught to fly.”~ Patrick Overton

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Thursday, August 13, 2009

"One can see clearly only with the heart. Anything essential is invisible to the eyes." -Antoine de Saint-Exupery."The Little Prince"

My pregnancy with Zoey was strange from the get go.The obvious being my "advance maternal age".Well,that wasn't exactly strange, just not the norm amongst my peer group.The beginning days were filled with uncertainty.Viability and the such.It seemed to take forever to see her little heart beat.Forever,in that according to my very high HCG levels there should have been a flickering of something and speculation based on the high numbers, of maybe a few flickers.Instead nothing.We prepared for a miscarriage and then viola,one more ultrasound and we had one beautiful and strong heartbeat.Things settle in.I settled in with the idea that I was going to look more like this child's grandmother then anything else come high school graduation but what the heck.My baby was healthy and that was all that mattered.Or so I thought.Week 19 in my pregnancy yielded my level 2 ultrasound.Everything looked great.We had "chatty Cathy" as a tech who became mysteriously and eerily quiet once she started scanning the heart.Mark of course thought I was over analyzing things as usual, where I knew in my very own heart of hearts, something was not right.Said technician left the room with some lame excuse and soon returned with the doctor.Here we go.I just knew I was right.I hate when that happens especially when bad news follows.I just knew it and wished that I didn't.They said they saw a tiny hole.Minor defect but wanted me back in two weeks to meet with the specialist who would be coming in.Two weeks went by.Not much worry.Lots of babies are born with minor heart defects.Many of which close without surgery.Still,all was good because my baby was healthy.Or so I thought.Two weeks again passed quickly and by the time I found myself lying on the exam table,that "tiny hole" was a whole different story.This hole had a name and it was Atrioventricular Canal Defect Complete and it was anything BUT tiny.I was told at that time I only had a few weeks to "decide "what I wanted to do ,which left me bewildered for only a moment until I realized they were asking if we were going to continue the pregnancy.I was shocked and sickened by the thought that I or anyone for that matter, had the option of choosing to end a pregnancy of a life already,in my opinion,living,at this stage of the game.Instead that direction of the conversation was quickly halted.The doctor went on to tell me that although my baby,a girl,had no other markers,this type of defect was primarily found in children born with Down syndrome.Okay.Fine.No big deal.I seriously asked very few question in regard to that and went on to what I felt was still the number one concern:What about the heart?Did I want an amnio?No I adamantly replied and said yet again ... what about the heart?After briefing me on the basics,I was sent packing.We snapped out of our fog fairly quickly and started doing research as to who and where was the very best place to gather info and begin addressing this now major heart defect.We were determined to do anything and everything to ensure our baby had the best chance at life.Thus our odyssey with Children's Hospital of Los Angeles began.We could have never known on that October day how life altering that in-utero diagnosis would be and how,almost three years later, it almost feels as if it was the very least of Zoey's medical issues.The road to surgery was long and arduous.Her very balanced,very treatable,very fixable heart defect quickly took a turn for the worse the very moment she was born.Her multitude of complications had her born into a status of heart failure and we would spend the next 5 1/2 months keeping her stable and growing to reach surgery day.It is not until we look back at her pictures prior to surgery,that we see so clearly how very,very sick she was.Today marks the 2 year anniversary of Zoey's heart repair.A day that found Mark and I not filled with one ounce of trepidation,rather immense relief that Zoey had made it to this day.We left the rest to God.Our roller coaster NICU days more then prepared us for the machines and the tempo of the cardiac unit and the resiliency and fight in our tiny baby took care of the rest.Yes,there were a few hairy moments during our stay but after a mere 8 days we left the hospital with a "new" baby.Zoey was pink ... not gray.Zoey nursed(She first BEGAN to nurse at 5 1/2 months!) and tolerated feeds .. no gagging or retching.Zoey smiled ... something we had never,ever seen.Our days since August the 13th 2007 have taken us on detours we could have never imagined.Not all good but most truly magical.Zoey was blessed with an absolute perfect heart repair,something they questioned as Zoey began to grow because as is true with Zoey and Zoey's way of doing things,her defect was larger then most.Of course it was ...isn't that the way Zoey has always done things?Uniquely Zoey.We have been saddened over the last 2 years as that perfect fix and it's integrity has been compromised,mainly by the nasty effects of ACTH and now chemo.But least we get discouraged, we have only to look at this remarkable little girl and her indestructible heart and her impenetrable spirit as she continues to pave the way for all of us as we journey forward together.

*These were two of Zoey's first ever,in her entire little life,ever smiles!They were before being released from the hospital and Mark was the very perfect,very proudvery teary eyed,recipient of them!Daddy's girl all along.

As I finished writing this and reflected back on the past few days,I am struck by the pace of our lives and how quickly and unexpectedly we must constantly and continually be changing gears.Our emotions can be all over the place on any given day and sometimes any given moment.... and that is just when we are talking about Zoey!Throw in 5 others and a marriage,forget about your individuality .... and oh,my,gosh ... we SO,SO,SO need a vacation!!My dream is a big old decked out motor home though ... now that would be nice for getaways ... a girl can dream,can't she?

22 comments:

Sweet Zoey, same smile even two years later. I find it funny how they say its an easy fix defect, that they can grow before fixing it, but most people I know. Jax included, it was a fight to keep them alive and keep their oxygen levels up just to get to surgery.

Thank you for sharing that "bit" of Zoey:) I have never been able to go back more than the last few months of following your little miracle- thought you would like to know...Zoey's story inspires me on a daily basis.

Heather!!!!! We just got home from our vacation, YEAH!!!!!!!! I knew she was just being "Zoey"! Our laptop took a vacation too,just stopped working on Wednesday morning. I've been going out of my mind thinking about you all. So happy, and so thankful! Love and kisses and hugs to all!!!!

Funny how things work out, your wishing for a vacation in a motor home..I live in a motor home hoping for a (permanent vacation) into a house one day.Ahhhh, we can dream, isn't it the truth?It's the dreams that keep us going some days.

What's really amazing to me is that anyone could think that children like ours are somehow deserving of life only if we choose to allow it.I can't imagine what an uninspired place this world would be without them.

Zoey is a blessing that came into our lives during our first encounters last fall at CHLA - she's a true gift from heaven. The fact that we have had the privilege to cross paths with this beautiful tiny warrior is a blessing in itself... the kind of blessing that only God can provide.

Heather - Your writings on this blog, along with Zoey's remarkable hugs, create a feeling that bonds us tightly. Thank you for continuing to share your miracle with us.

Life, even life that is relatively 'crisis-free' is a roller coaster anyway. The lives of us parents who suffer a thousandfold for each issue that besets any of our kids? It's the kind of roller coaster that nobody should have to ride.

I liked this retrospective a lot. It's cool to see where you are today versus where you were. Carter, my first born, had that heart thing during his first ultrasound. Wonder why some kids dodge while others do not? Such a mystery to me.

Heather - I totally love your honesty! Zoey is a miracle. My son Aaron who is 10 says that he prays everyday for Zoey. That's just melts my heart that even though our family needs so much prayers that he prays faithfully for a little girl that he has never met, but knows that I read your amazing blog everyday. You are such a role model for me. Keep trusting God and remember one day at a time.

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Do it for Zoey and all of her fellow warrior friends.

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